Handprints - Summer 2003 - Children`s Hospital Oakland

HandPrints
C H I L D R E N ' S H O S P I TA L & R E S E A R C H C E N T E R AT O A K L A N D
inside:
spring 2003
room to
grow • PAGE 6
FACES of
success •
RARE SURGERY
CURES KEYVON
FUTURE MOVERS
AND SHAKERS
PAGE 14
writer on
the verge
• PAGE 18
POEMS BY A
14-YEAR-OLD PATIENT
2
CHILDREN’S HANDPRINTS
calendar
events
OF
table of contents
5
JUNE
13 Assemblywoman Loni Hancock
3
4
HEALTH FACTS
5
IN THEIR OWN WORDS
An Artist’s Statements As Jermaine’s muscular dystrophy progressed, he feared he would never be able to express himself creatively again. But while participating in Children’s Artist in Residence
Program he has created an impressive body of work.
visits Children’s Hospital, 510-4283367
19 Turner Construction Surf’s Up
Beach Party, Oakland, 510-4283885, ext. 5344
19 Mulberry Branch Fair Preview,
6
6
J U LY
31 Lombardy Branch Annual
8
8
10
presentation on pediatric HIV/AIDS
by Dr. Ann Petru, Children’s
Hospital Oakland Research
Institute, 510-428-3363
Center at Oakland Media Day,
Oakland, 510-428-3069
13
14
14
FEATURE
FACES of Success Bridging the gap between abandoned hope and
achieved goals is a challenge that the FACES for the Future: Health
Professions Internship Partnership at Children’s Hospital & Research
Center of Oakland has embraced with life-altering results for the
program’s participants.
925-680-1650
29 Score Fore Kids Golf Classic
OCTOBER
16 2003 Legacy Celebration
PARENT PROFILE
Supermom What most people find the hard part of parenting—
caring for infants when they are discomforted—Evelynne CannonWright calls a joy. Her home provides temporary respite for
emergency foster-care kids—more than 100 since 1992.
27 Foresters Golf Classic,
sponsored by Colliers International,
Ruby Hill Golf Club, Pleasanton,
510-428-3128
RESEARCHER PROFILE
Solving the Food-Body Problem Focusing on metabolic adjustments to changes in nutrient intakes in humans, Janet King, PhD,
is especially interested in metabolism and nutrient utilization of
pregnant and lactating women.
SEPTEMBER
12 What’s Up Doc? Luncheon, a
17 Children’s Hospital & Research
PHYSICIAN PROFILE
Medicine, Meaning Justice In each case of suspected child abuse,
Jim Crawford, MD, a forensic pediatrician, must determine whether
the child has indeed been abused, has a medical condition that
mimics abuse, or has sustained an accidental injury. “No pressure, but
you just can’t ever be wrong,” Dr. Crawford often says.
Summer Garden Cocktail Party,
Orinda, 925-254-6468
Quarters, Alameda, 510-562-7055
COVER STORY
Room To Grow: Keyvon’s Story Seven-year-old Keyvon reports that
all girls think he’s “cute.” Their assessment is accurate, but the problem that prompted the unusual operation on Keyvon’s skull went far
beyond aesthetics: Keyvon had a very rare life-threatening condition
that had defied diagnosis before his arrival at Children’s.
Alameda County Fairgrounds,
Pleasanton, 925-734-5273
AUGUST
2-3 Kiwanis Miracle Mile of
DEAR READER
Letter from the President
18
18
Dinner, Piedmont, 510-428-3362
POETRY
Summer’s Sun and Winter’s Cold and A Cherished Break by
Mamie Wilhelm. Fourteen-year-old Mamie is a published poet and a
former Children’s Hospital patient.
20
CHILDREN’S HOSPITAL FOUNDATION
Bridging Local Research To Families Nationwide With
support from the William G. McGowan Charitable Fund the
Sibling Donor Cord Blood Program seeks to deliver cures to children nationwide who suffer from life-threatening blood disorders.
22
CHILDREN’S HOSPITAL & RESEARCH CENTER
FOUNDATION
A Statement of Values Aileen Simpson’s bequest will make a difference in the lives of generations of kids needing care at Children’s.
24
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
LIFESTYLE
Teens, Ready For Change? This fitness plan, designed by specialists at the Children’s Hospital & Research Center at Oakland Clinical
Nutrition department, will help teens transition into a healthier
lifestyle.
SUMMER 2003
dear reader:
Meeting the complex physical, emotional, social, and
economic needs of all children requires the attentive concern and care of adults in the community. At Children’s
Hospital & Research Center at Oakland, our definition of
community includes not only “our” kids—those with
whom we have direct contact—but children and families
everywhere. As technology and instant communications
have made the world smaller, our community of care has
grown larger.
Our community is far-flung. Breakthroughs in research
have the potential to influence the lives of countless
children and families worldwide. On page 10, we profile
Dr. Janet King, whose work in prenatal nutrition will benefit mothers and babies
everywhere. And forensic pediatrician Dr. James Crawford (page 8) is a national
leader in the fight against child abuse.
Closer to home, we are celebrating the successes of our first FACES for the Future:
Health Professions Internship Partnership graduates. Read on page 14 about how
this program, too, promotes the health of the community through opportunities,
training, and mentoring for future healthcare practitioners from Alameda county.
3
HandPrints
A C H I L D R E N ' S H O S P I TA L & R E S E A R C H C E N T E R AT O A K L A N D P U B L I C AT I O N
Children’s HandPrints is a publication
of Children’s Hospital & Research
Center at Oakland, 747 52nd Street,
Oakland, CA 94609; 510-428-3000.
Written, designed and produced by:
Communications Dept. at
Children’s Hospital & Research
Center at Oakland
665 53rd Street
Oakland, CA 94609
Phone: 510-428-3367
Fax: 510-601-3907
Tony Paap
President and Chief Executive Officer
Mary L. Dean
Senior Vice President, External Relations
Debbie Dare
Graphic/Print Designer
Susan Foxall
Operations Manager
Bev Mikalonis
Media and Community Relations Manager
When a child is sick or hurt, what matters most to the child and family is quality
one-on-one care and depth of expertise. Keyvon (page 6) was very sick with a rare
condition that had defied diagnosis. Children’s doctors delivered both a diagnosis
and a cure, with life-altering results.
Vanya Rainova
As science and technology progress, we see that some of the most formidable
barriers to good health can be outside the realm of medicine. We’ve increased
our efforts to protect the right of all children to quality pediatric care. Our timehonored approach—treating children rather than treating illnesses—is more
important than ever as the delivery of treatment becomes increasingly politicized.
Concern for children’s well-being doesn’t start when they get sick or are injured. It
requires a day-to-day commitment from adults throughout the global village who
care about kids and the future.
Contributing Editor:
Warmest regards,
Tony Paap
President and Chief Executive Officer,
Children’s Hospital & Research Center at Oakland
Publications Manager
Neile Shea
Senior Web Designer
Cynthia Romanov
Contributing Writers:
Jermaine Brown
Mamie Wilhelm
Illustrations:
Neile Shea
4
CHILDREN’S HANDPRINTS
health facts
*
Craniosynostosis—the premature closure of
a single cranial suture, or absence of formation of a cranial suture—is relatively
common; Children’s Hospital & Research
Center at Oakland specialists treat 30 to 40
cases annually. Early diagnosis and treatment in the first months of the life of a
child with a non-syndromic, single-suture
synostosis can allow for endoscopic repair
with small incisions. The Division of
Neurosurgery at Children’s Hospital
Oakland is the only neurosurgical group
that performs this minimally invasive
procedure in Northern California.
READ ABOUT TREATMENT OF CRANIOSYNOSTOSIS IN ROOM TO GROW:
KEYVON’S STORY ON PAGE 6.
*
It is estimated that one out of every
four children experiences some form
of abuse. Yet only a small percentage
of child abuse is ever reported.
(Child Abuse Prevention Association at
www.childabuseprevention.org)
READ ABOUT PREVENTING CHILD ABUSE
IN MEDICINE, MEANING JUSTICE ON
PAGE 8.
*
About one-half of the world’s population
subsists on diets that are insufficient in
zinc. Low zinc intake is associated with
stunting, or growth retardation, in children
and with an increased susceptibility to
infections.
READ ABOUT ZINC METABOLISM
RESEARCH IN SOLVING THE FOODBODY PROBLEM ON PAGE 10.
* *
*
There are nearly twice as many overweight
children and almost three times as many
overweight adolescents as there were in
1980. Fifteen percent of children ages 5
to 19 (almost 9 million) are overweight.
(Center for Disease Control and Prevention
at www.cdc.gov)
READ ABOUT HEALTHY WAYS TO
BECOME FIT IN TEENS READY FOR
CHANGE? ON PAGE 24.
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
AUTISM ON THE RISE
The New York Times
(May 13, 2003) reports that
the number of California
children identified by caseworkers as autistic rose to
20,377 in December 2002
from 10,360 in December
1998. From January 6 to April 4 this year, 832 children were added to
the caseload, a rate of nearly 10 cases a day.
The figures are for autism as defined by the American Psychiatric
Association: a lifelong disorder marked by an inability to form social
relationships and an obsession with repetitive behaviors. They exclude
children under age 3, those with related disorders like Asperger
syndrome and pervasive developmental disorder, and children believed
to have undiagnosed autism.
Hypotheses to explain the rise in autism abound: many experts
believe that genetic factors powerfully predispose certain children to
autism but that some environmental factor may be playing a role in the
increased caseload. While some parents suspect mercury in childhood
vaccines, epidemiological studies have not been able to confirm a link.
Other possibilities include man-made compounds like plastics and
PCB’s, other heavy metals, food additives, and medical procedures.
However, California state officials told The Times they could not explain
the increase.
Diagnoses of autism have
nearly doubled in the last
four years among children
in California.
Children’s Hospital & Research Center at Oakland’s Developmental
and Behavioral Pediatrics Child Development Center provides
evaluation, diagnostic, treatment, and referral services for children
who have or are at risk for developmental delay, developmental
disabilities, and learning or behavioral problems. For more
information about the department’s autism treatment program, visit
www.childrenshospitaloakland.org/cs/cdbp.html or call 510-428-3351. ★
SUMMER 2003
5
A r t i s t ’s
statement
B Y JERMAINE BROWN
I H AV E B E E N D O I N G A R T since I was 6 years old.
When I was 12, I started losing strength in my arms, but continued
to paint and draw until I was about 14. At that point I thought that
WORDS
I wasn't able to express myself creatively anymore. When I came to
Children's Hospital three years ago, I started to participate in the Artist in Residence
program. In the beginning I was unsure of myself, but then I made my first marbleized
paper painting.
It helped me regain confidence in my ability. By floating layers of ink on water, I
could create patterns in the ink by blowing through a straw. I discovered that by using
my breath, I was able to create art. After using this process for a while, I started feeling
confident enough to paint with a brush in my mouth. “Mind of Wisdom’ (killer whale)
was my first painting using the brush this way. It takes 3 to 4 weeks for me to create a
painting like “Mind of Wisdom” or “Brave Spirit.”
I love sea life; it was my favorite thing to paint as a kid. The freedom of sea life is
how I express freedom in my life. I like to do art because it helps take things off my
mind, and it is a way to express myself creatively. ★
IN THEIR
Own
“The Artistic Influence,”
Jermaine Brown’s first solo
exhibit, opened Wednesday,
April 30, at the Children’s
Hospital & Research Center
at Oakland Outpatient Center
atrium. Jermaine, who has
muscular dystrophy, has
been a patient at Children’s
for several years. During his
stay at the hospital he
worked with Artist in
Residence Kyle McDonald on
numerous art projects,
including paintings and a
documentary about his
creative process.
6
CHILDREN’S HANDPRINTS
ROOM
TO
G
R
O
W
:
KEYVON’S STORY
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
SUMMER 2003
7
Premature closure of a single cranial
suture, or absence of formation of a cranial
“All the girls think I’m cute now,” reports Keyvon, age
7. One year after his surgery at Children’s Hospital &
Research Center at Oakland, the girls’ assessment is
indeed accurate. But the problem that prompted the
unusual operation on his skull went far beyond aesthetics:
Keyvon had a very rare life-threatening condition that
had defied diagnosis before his arrival at Children’s.
Keyvon began suffering from debilitating headaches at age 5. “The pain
came suddenly and was severe,” Keyvon’s grandmother, Jeanne Danielson,
remembers. “In the middle of something, he would say ‘Oh-oh, here it comes’
and then he would lay down until he threw up. Then he would fall asleep. At
their worst, the headaches happened every other day.”
As the headaches intensified the family and the boy’s pediatrician wondered
whether a vision problem might be the cause. An ophthalmologist didn’t find
anything amiss. Then, because the headaches were coupled with unusually high
blood pressure, Keyvon was referred to the Nephrology department at
Children’s.
Kidney malfunction is often the source of high blood pressure in kids, but
Keyvon’s tests came back normal. However, nephrologist Barbara Botelho,
MD, noticed that the boy’s eyes were bulging slightly. Dr. Botelho referred
Keyvon to pediatric neurosurgeon Peter Sun, MD, who named the source of
Keyvon’s symptoms and referred him to plastic craniofacial surgeon Bryant
Toth, MD, at Children’s Hospital’s Comprehensive Craniofacial Center.
Keyvon had a rare form of a serious skull disorder called craniosynostosis. A
child’s skull is composed of multiple bones separated by sutures, or openings,
that allow for growth. In craniosynostosis, these “growth lines” fuse prematurely,
usually before birth, forcing the skull to expand in the direction of the remaining open sutures and causing a noticeably abnormal head shape. Because of this
strong visual symptom, most cases of craniosynostosis are easily diagnosed and
corrective surgeries are typically done within the first year of the child’s life.
Atypically for the condition, Keyvon’s skull sutures did not close in utero but
at some later time. His head, which for a while had been able to grow along
with the rest of his body, appeared to be symmetrical—at first glance. But by the
time he came to Children’s, all of Keyvon’s skull sutures had fused, and his head
size was small for his face. The skull was also “heaping up” creating a peak-like
shape on the top of his head. His brain was developing and expanding, but his
skull could not. The terrible headaches and (most likely) the high blood pressure
were the result of pressure building in his head—pressure that could be lethal.
[ C O N T I N U E D O N PA G E 2 6 ]
suture is called craniosynostosis. It leads to
characteristic craniofacial deformities.
Craniosynostosis is relatively common;
Children’s Hospital & Research Center at
Oakland specialists treat 30 to 40 cases
annually. It is not typically associated with a
syndrome and not genetic in nature. A child
with non-syndromic single-suture synostosis
will usually have no functional problems, such
as difficulties breathing or feeding, early on.
Surgical release of the closed suture is necessary to avoid the psychosocial impacts of the
deformity and potential constriction of the
brain. It is usually done within the first year
of the child’s life. Early diagnosis and treatment in the first months of life can allow for
a minimally invasive endoscopic repair with
small incisions. The Division of Neurosurgery
at Children’s Hospital & Research Center at
Oakland is the only neurosurgical group that
performs this minimally invasive procedure in
Northern California.
Premature closure of multiple sutures,
including facial sutures, is seen in individuals
with a craniosynostosis syndrome. Of the
most common craniosynostosis syndromes,
Crouzon, Apert, and Pfeiffer, the first two are
rare, occurring in approximately one in
100,000 births. Pfeiffer syndrome is more
common, occurring in one in 25,000 births.
Children with Apert syndrome also have
webbing of the hands and feet (syndactyly).
Skull abnormalities in children with craniosynostosis syndromes also require early attention, usually within the first six months of life.
Physicians were unable to confirm Keyvon
had either of these syndromes. Lab tests for
known genetic mutations that can cause the
syndrome came back negative. ★
8
CHILDREN’S HANDPRINTS
MEDICINE,
Meaning
JU
James Crawford, around age 18:
Self-description: “Card-carrying geek”
Dream job: High-school science teacher or a
veterinarian
Volunteer activities: University of Pennsylvania
Veterinary Hospital; later: home repair
projects in Kentucky, similar to Habitat for
Humanity
Opinion about physicians: “Grumpy, conservative, unpleasant parents of people I know”
In 1986, something changed for Jim Crawford.
That was the year when Ferdinand Marcos’ dictatorship
ended in the Philippines; when the space shuttle
Challenger exploded shortly after liftoff; and when
Haiti’s “President For Life,” Jean-Claude “Baby
Doc” Duvalier, was ousted in a popular uprising.
The last of these events changed Jim Crawford’s life.
“It didn’t make sense to me to race through college,”
Dr. Crawford says today, explaining his decision to
withdraw from Swarthmore College in his junior year.
“I didn’t want to do something just because that’s what I
ended up doing.” Instead of stumbling into a default
job after graduation, he left for Haiti to volunteer for
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
Mother Theresa’s Sisters of Charity. And he did so with
the idealistic naïveté of one’s early 20s: he knew where
he was going, but the Sisters had no idea he was coming. Knocking on the door at their headquarters in Portau-Prince, Dr. Crawford remembers thinking: “How
hard could it be to work for free, doing whatever one is
asked to do?” Opening the door, Sister Rose had a
different thought: “We don’t need more volunteers,”
and told him so. She referred him to the Sisters in
Jacmel, who also didn’t need him. Undaunted, Dr.
Crawford went back to Port-au-Prince, knocked again
on the Sisters’ door, and this time received a warm welcome from a nun who explained that Sister Rose, the
oldest of the nuns, simply did not like volunteers and
turned them all away. “I had taken a four-day, futile
journey through Haiti because I got the wrong nun,”
Dr. Crawford says ruefully.
So Dr. Crawford went to work as a volunteer. A
month later, Haiti was in a state of civil unrest. In the
midst of the chaos and violence that followed Duvalier’s
ouster, volunteer physicians and dentists from all over
the world provided vital health services to Haiti’s
impoverished population. “It was a wonderful experience,” Dr. Crawford states. “It completely changed my
life. I’m a physician today because I came in contact
with these doctors and I was able to see that doctors are
not necessarily grumpy and conservative. They were
people who used medicine as a tool for social justice and
social change. The six months I spent with them totally
reorganized my world.”
At that time, HIV was increasing in Haiti. “People
were sick and dying and everyone knew there was something distinctly wrong with them but nobody under-
SUMMER 2003
9
p h y s i c i a n p r o f i l e : J A M E S C R AW F O R D , M D
stood what it was,”
Dr. Crawford
remembers. “It was
common for families of five living in
an eight-by-eightfoot shack to throw
the sick out on the
street. The Sisters gave these people a place to die with dignity.”
The HIV epidemic in Haiti was Dr. Crawford’s first exposure
to large-scale death. “When people are surrounded by love and
respect, death does not have to be such a lonely or scary experience,” Dr. Crawford says. “The humanity and compassion that
was offered to these people was very important to me and was an
amazing thing to be a part of.”
Returning to Swarthmore that fall, Jim Crawford told his
counselor he wanted to go to medical school. The counselor all
but laughed, explaining that only people who had planned years
in advance could entertain the thought of applying to medical
school. Dr. Crawford responded he had given it a lot of thought
and it was exactly what he wanted to do. He also wasn’t exaggerating when describing himself as a “card-carrying geek”: it turned
out he had taken all the requisite pre-med courses, not in anticipation of need, but because he enjoyed them. He was admitted
to the University of Pennsylvania School of Medicine.
Dr. Crawford knew he wanted to be either a pediatrician or a
family practitioner, and a two-month elective with Cindy
Christian, MD, a forensic pediatrician at Children’s Hospital
of Philadelphia, tipped the scale toward pediatrics. After his residency, Dr. Crawford returned to Philadelphia where he completed a fellowship in child abuse and neglect with Dr. Christian. He
describes his mentor as a “fabulous, wonderful, talented, brilliant
woman who became a real role model.” Today, Dr. Crawford uses
the same adjectives to describe his colleagues at the Center for
Child Protection (CCP) at Children’s Hospital & Research
Center at Oakland, where he serves as medical director. Dr.
Crawford is one of only two forensic pediatricians in the Bay
Area.
As a forensic pediatrician, Dr. Crawford defines his job as trying to understand and objectively record what has happened to a
child. He and his collegues at CCP see approximately 1000 cases
STICE
of suspected child abuse a year. In each case, it must be determined whether the child has indeed been abused, has a medical
condition that mimics abuse, or has sustained injury that careful
questioning reveals as accidental. “No pressure, but you just can’t
ever be wrong,” Dr. Crawford often says.
“Sometimes we are able to identify a ‘medical mimic,’ a medical problem that has caused people to be worried about child
abuse,” states Dr. Crawford. “Some of the diseases that mimic
child abuse have significant problems associated with them, but
by making the correct diagnosis, we ensure that children aren’t
going to be taken away inappropriately, or caretakers won’t be
wrongly accused of having committed a crime.” An example of
such a disease is osteogenesis imperfecta (OI), a genetic condition
characterized by bones that break easily. People with OI can
break bones from minor traumas that would not cause a
fracture in an unaffected person.
Unfortunately, medical mimics are far less common than
abuse. In cases of true abuse, Dr. Crawford says his job gives him
an opportunity to speak for a child: “A lot of times my patients
are very young, or their head injuries are so severe that they can’t
talk. But I can explain to a judge or a jury why a baby has 12
broken ribs or why he will never talk or walk or blow out the
candles on his birthday cake.”
For most people, the scenarios Dr. Crawford encounters in
his professional life are horrific. He is often asked “How do you
do your job? What gets you through?” His reply: “My job allows
me to do what I wanted to do when I went into medicine—use
it as a tool for social justice. On some occasions justice can
happen. Sadly, sometimes, even though we are able to say what
happened, a perpetrator is never identified.”
Dr. Crawford has testified at more than 300 trials. He points
out he never testifies for the defense or the prosecution, only at
the request of one of them. “I can’t pick a team, I can only say
what I know about what has happened. If the mechanism offered
does not explain the presentation, I can say that and I can explain
why. The same is true if it does.”
Dr. Crawford feels it is important to understand more about
what enables a child to disclose abuse in order to prevent repeated child abuse. “Most kids don’t tell someone they have been
[ C O N T I N U E D O N PA G E 2 7 ]
10
CHILDREN’S HANDPRINTS
Janet King, PhD,
Studies How the
Body Adjusts to
Change in Nutrition
FUNCTIONAL AND PRECISELY ORDERED, the laboratory
and office of Janet King, PhD,
looks like an apartment waiting for a
new tenant, a perception not far from
reality. Dr. King recently joined
Children’s Hospital Oakland Research
Institute (CHORI), and the artifacts
of her professional life
are still packed in
boxes stacked along
the office walls.
Dr. King describes
herself as a member of
“a small, elite group of
nutritionists who are interested in the
impact of what we eat and how the
body metabolizes it in humans,” a précis that falls short of capturing the
scope and significance of Dr. King’s
body of scientific work. Focusing on
metabolic adjustments to changes in
nutrient intakes in humans, she is
especially interested in metabolism
and nutrient—particularly zinc, calcium, and energy—utilization of pregnant and lactating women.
Dr. King began her career
in the mid-1960s, working as
a dietitian in a hospital where
expectant mothers of any
pre-pregnancy weight who
gained more than 18 pounds
faced a daily diet comprised
of only six cartons of non-fat milk—a
total of slightly less than 500 calories—and possible hospitalization.
Behind this rigorous weight management practice was the belief that
weight gain caused toxemia, a serious
complication of pregnancy that can
result in death.
“What they
didn’t
recognize,” Dr.
King says of the
obstetricians
prescribing the
restrictive protocol, “is that the link between toxemia
and weight gain was reversed: toxemic
women retain water and, therefore,
gain weight.”
In this clinical context, Dr. King
was inspired to earn a doctorate in
nutrition. In graduate school she studied protein requirements in pregnant
women. “At the time there were two
extremes: people who believed that a
pregnant woman must eat for two,
Solving the
Food-Body
Problem
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
and others who maintained that her
nutritional needs were not different
than in her non-pregnant state,” Dr.
King explains. She studied protein
requirements in pregnant teens,
hypothesizing they would be different
from that of pregnant adults. In fact,
they were very similar, possibly due to
the fact that most study participants
had begun menstruating more than
two years prior to the study, so hormonally they were quite mature.
In 1990, Dr. King chaired an
Institute of Medicine Committee
charged with determining how much
weight women should gain during
pregnancy in order to give birth to a
child of healthy weight—between
three and three and a half kilos (or six
and a half to seven and a half
pounds). The rule of thumb then was
to limit weight gain to no more than
25 pounds. But data available to the
Committee indicated that weight gain
depends on the mother’s weight at
conception. So, different criteria were
developed for women who were
underweight, “ideal,” moderately
overweight, and obese.
Through her research, Dr. King
realized that “the ideal average
woman” could gain anywhere between
10 and 50 pounds during pregnancy.
SUMMER 2003
11
researcher profile: J A N E T K I N G , P h D
“I walked in the room and wanted to
turn around and run. The grad student
looked like an 18-year-old who had just
jumped off his surfboard and flown up from
L.A. I thought, ‘How can I explain to him
that I want him to help me find stable
isotopes of zinc in fecal samples collected
from women on the pill?’ But I was wrong
about Chris. He developed a neutron activation method for measuring just that.”
“We still don’t understand the source of
this variation and I think we need genetic
information to explain it,” Dr. King says.
What Dr. King did understand was
that not all women who accumulated
additional calories, or fat stores, during
pregnancy ate much more than their peers.
Maternal fat gain seemed to relate to
women’s basal metabolic rates (BMR), or
the energy the body needs while at rest.
Women with bigger babies had higher
BMRs and gained less fat. It also turned
out that basal metabolic rates were highest
among pregnant obese women, which
explained why they didn’t gain much
weight during pregnancy.
Dr. King’s findings of an association
between body fat and BMR in obese pregnant women were counter to scientists’
previous assumptions. BMR is typically
related to the amount of lean muscle
tissue; the more muscular the person, the
more energy her body needs. But Dr. King
maintained that in pregnant obese women,
BMR correlated with body fat. “It took us
a long time to publish this paper. The
reviewers told us we were crazy. We discovered later that obese people secreted higher
amounts of leptin, an enzyme secreted by
adipose (fatty) tissue, and leptin was associated with high BMR,” Dr. King reports.
Dr. King wondered why, given that
they had such high energy needs and did
not gain much weight, obese women still
delivered large babies. The probable
answer: Obese women have high levels of
glucose, the “preferred fuel” of the fetus,
which passes readily through the placenta.
In order to use glucose, the fetus must
produce insulin. Because insulin is also a
growth hormone, the babies are born
large. “But bigger is not always better,” Dr.
King cautions. Mothers of large babies
may develop gestational diabetes. It also
appears that some kind of fetal imprinting
affects the metabolism of the child, so
these children are often overweight as teens
and are at greater risk for developing type
2 diabetes.
Dr. King’s current studies focus on
whether, through diet, glucose levels in
obese pregnant women can be controlled
to prevent excessive transfer to, and accelerated growth of, the fetus. Her hypothesis
is that a diet high in complex carbohydrates, as opposed to simple sugars, will
prevent an increase in glucose secretion
after meals and the associated accelerated
fetal growth.
Dr. King’s interest in zinc metabolism
happened by chance. After graduating
from University of California, Berkeley,
Dr. King accepted a faculty position at her
alma mater. “I had no idea what I was
doing,” she chuckles, recalling her naiveté.
“I had completed this one study and was
all of a sudden expected to set up my own
laboratory, supervise graduate students,
publish articles, teach… Without the support of my faculty colleagues, it would
have been suicidal.”
But soon after her appointment, Dr.
King was offered both a gift and a challenge when Sheldon Margen, MD,
then chair of Berkeley’s Department of
Nutritional Sciences, received a grant to
study trace elements in women taking oral
contraceptives. Saying he had no time to
do the study, he handed the grant over to
Dr. King.
Measuring zinc in the body was a challenge, because zinc is virtually everywhere.
“It is very easy to contaminate a sample,”
[ C O N T I N U E D O N PA G E 1 2 ]
12
CHILDREN’S HANDPRINTS
Solving the
[ C O N T I N U E D F R O M PA G E 1 1 ]
Food-Body
Dr. King explains.
“We had to work
under tents and use plastic instead of
glass.” Also, the concentrations in tissues
were extremely low, requiring the development of new methods to accurately determine the zinc content of blood, stool, and
urine samples. Dr. King discovered
women on the pill had lower levels of zinc
in their plasma and urine. “That wasn’t
very interesting,” Dr. King says. But what
was interesting was that this was the first
study ever done on zinc metabolism in
humans; all previous studies had been in
experimental animals.
“I realized that measuring concentration of zinc was not going to get us too
far,” Dr. King continues. She suggested
using radioactive zinc to trace its metabolism. Using elements with low radioactivity was an accepted practice, but Dr.
Margen was ethically opposed to giving
radioactive elements to women of reproductive age. Dr. King says the experience
made her much more cautious and
thoughtful about her research methods
throughout her career.
An alternative was to use stable isotopes of zinc, but neither Dr. King nor
her colleagues had any idea how to do so;
it had never been done before. “So one
day I walked all the way up the hill—the
space assignment reflected the academic
hierarchy, with nutrition at the bottom
and Physics at the top of the Berkeley
campus—to meet a faculty member in
Physics and one of his students who he
said could help me.” Dr. King remembers.
“I walked in the room and wanted to turn
around and run. The grad student looked
like an 18-year-old who had just jumped
off his surfboard and flown up from L.A.
I thought, ‘How can I explain to him that
I want him to help me find stable isotopes
Problem
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
of zinc in fecal samples collected from
women on the pill?’ But I was wrong
about Chris. He developed a neutron activation method for measuring just that.”
The methodology developed from that
study is now employed worldwide, rendering the use of radioactive elements
unnecessary. Chris Caan, PhD, went
on to study calcium metabolism in astronauts using stable isotopes and is now on
the faculty of the University of California,
San Francisco.
as possible to prevent problems much
more serious than those caused by low
zinc levels in plasma.
Dr. King now studies the factors
affecting zinc utilization from diet.
Pregnant women, for example, need more
zinc and their bodies meet that need by
increasing absorption. However, iron—a
supplement prescribed for virtually all
pregnant women—interferes with zinc
utilization. One of Dr. King’s latest studies, the results of which are still unknown,
“Talking about my research is
always a humbling experience...”
Armed with good methodology and
using iron as a model of mineral metabolism, Dr. King thought all she needed to
do was find a good biochemical marker of
zinc deficiency so human deficiency could
be diagnosed. “Boy, was I stupid,” she
now says. “Zinc isn’t at all like iron.”
Six men were fed a zinc-free diet.
After three weeks, two of them reported a
severe acne problem. A third man had
diarrhea, and a fourth complained of sore
throat. Dr. King was shocked to discover
their plasma levels of zinc had dropped
alarmingly. Three days after resuming a
regular diet, the men were symptom-free.
“I was confused: while zinc in plasma
dropped in a mere three weeks, enzymes
that required zinc didn’t change much.”
Since then, Dr. King has discovered
that people tend to sequester zinc in their
muscles and bones, where 90 percent of
the body’s zinc is found, while the
remaining 10 percent, in the blood, drops
rapidly. Dr. King suggested that because
zinc is essential in cell division and DNA
replication, the body hangs on to as much
focuses on how to give iron to women
while avoiding interference with zinc utilization.
After earning her doctorate, Dr. King
spent her career in an academic research
setting. She says she is glad to be in a
research institute associated with a freestanding hospital. “My work in a clinical
environment was what prompted me to
earn a PhD, so I’m excited to return to
these roots.”
After a stellar career spanning 30-plus
years, Dr. King maintains: “Talking about
my research is always a humbling experience because I always feel like I’ve just
wandered around science and haven’t
done much.”
Dr. King is a professor of nutrition
and internal medicine at the University of
California, Davis; a professor of nutrition
at the University of California, Berkeley;
and a scientist at CHORI. She is a member of the National Academy of Science’s
Institute of Medicine. ★
SUMMER 2003
Evelynne Cannon-Wright can
still remember the times when, early in
her marriage to Johnnie, she would
walk into their new home and be stunned
by the silence. Growing up in a large,
busy family, the conversation, laughter,
and cries of her nine brothers and sisters
and their various friends had been the
soundtrack of Evelynne’s childhood, and
the contrast between that boisterous
background and the quiet of her own
house was stark. Those peaceful days are
long gone. Today, Evelynne and Johnnie’s
home provides temporary respite for
emergency foster-care kids—more than
100 since 1992. Foster mom Evelynne
welcomes all children, even without
knowing their background or health condition.
Evelynne is this year’s recipient of the
Lillian R. Weil Memorial Award, which
honors a parent who makes a difference
in kids’ lives. Ask anyone who knows
Evelynne, and they’ll tell you that recognition is past due. “She takes home kids
that even I, a physician, would be scared
to care for at home,” says Maya
Bunik, MD, an ambulatory clinic pediatrician at Children’s Hospital &
Research Center at Oakland. “Nothing
really fazes her.” What most people find a
hard part of parenting—caring for
infants when they are discomforted—Evelynne calls a joy. “I love
babies and I love to care for them,”
Evelynne says. “Kids really don’t
need much; they need loving, caring
adults and good medical care.
Unfortunately, many kids are not
getting even these basics nowadays.
As long as I’m able to, and as best as
I can, I want to give that to as many
kids as possible.”
Asked how she’s doing, Evelynne’s
response is invariable: “I’m blessed.”
“I’ve seen her on mornings after sleepless nights caring for very ill children, and
she still was so even-keeled, so upbeat,”
Dr. Bunik says. But Evelynne recalls difficult times as well, like when an infant
stopped breathing and she had to perform CPR. “She’s now 7 years old and
almost as tall as I am,” Evelynne reports.
Another time a foster-care baby needed to
have a spinal tap. “It was the only time
when I told myself ‘I can’t do this, I can’t
watch it’,” Evelynne remembers.
“Sometimes, when people learn that I am
a foster care mom they tell me they can’t
imagine how I could do what I do, but
then I look at doctors and can’t imagine
how they do what they do. We’re all born
to do something and I am fortunate to
have realized what my calling was. I am a
mother.”
Evelynne and Johnnie have two adult
sons, Jonathan, 26, and Adrian, 19,
whom Evelynne declines to characterize
as “biological.” “I don’t distinguish
between my children,” she says. “They’re
my children and that says enough.” The
Wrights also have two foster-adopted
children, a boy and a girl*, both 9 years
old. They’ve been frequent visitors to
13
Children’s; the boy had a GI tube, and
the girl suffers from absence seizures.
During an absence seizure it can appear
to onlookers that the person is daydreaming or “switching off,” something nearly
everyone does when bored or distracted.
Absence seizures are different from normal childhood daydreaming, and can be
very hard to spot.
Because of the ongoing medical care
her children require, Evelynne is a wellknown member of the Children’s
Hospital community. She doesn’t have a
formal medical education, but has
repeatedly demonstrated what she calls
her “discerning intuition” by determining
when her children are not well, sometimes even before symptoms occur.
Children’s physicians trust her judgment
fully. “When Evelynne calls to say she
thinks there is something wrong, I try to
arrange for an appointment as soon as
possible because chances are she’s right,”
Dr. Bunik says. “She’s a true partner in
the care of her children. It is a privilege to
work with a parent like her on cases that
are sometimes very complicated.” As in a
true partnership, this attitude is shared.
“Maya has been wonderful. She’s a real
trooper. She trusts me and I trust her, and
together, we’ve been through a lot,”
Evelynne says about Dr. Bunik.
Happily, Evelynne’s trips to the
hospital are less frequent these
days, because the kids are doing
much better. In fact, this summer,
the two kids will accompany
Evelynne, brother Adrian, their
grandmother and three of their
aunties (two of whom are also foster parents) on a Caribbean cruise.
We wish them all a bon voyage. ★
* To protect their privacy, we’ve omitted
the names of Evelynne’s foster adopted
kids.
14
CHILDREN’S HANDPRINTS
FACES
of
Success
All kids have dreams they believe can come
true. But when socioeconomics lowers the bar,
those dreams may appear to be impossible,
unreachable fantasies. Some dreams cease
altogether.
Bridging the gap between abandoned hope
and achieved goals is a challenge that the
DIEGO GARCÍA
Diego García’s quiet maturity is grounded
in a depth of emotional intelligence not often
found in a 17-year-old. Warm and soft-spoken, he
discusses his life with eloquence and candor.
“I used to hang around with the wrong
crowd,” he states. “I grew up in an environment
of violence, drugs, the typical stuff a Latino male
teenager is exposed to (in my community). My
friends used to steal cars and we would ride
around. But I did realize that I didn’t want to be
in that company for the rest of my life.”
Then he met Tomás Magaña, MD. Dr.
Magaña visited Diego’s school to talk about
FACES. Based at Children’s Hospital Oakland,
this three-year program (FACES admits up to 30
teenagers each year) introduces underrepresented high school minorities to careers in the health
sciences through hands-on internships, mentor-
FACES for the Future: Health Professions
ing, and an array of support services, including
Internship Partnership at Children’s Hospital
tutoring, training classes, SAT and college prepa-
& Research Center at Oakland has embraced
ration workshops, case management services,
and a strong psychosocial program. “He was the
with life-altering results for the program’s
right person and he came at the right time in my
participants. The careers of these young
life,” Diego says.
women and men will offer one important meas-
Diego had always been “curious about how
the body works,” so he applied to FACES.
ure of their—and the program’s—success. But
Acceptance in the 90-student program meant a
whether or not they eventually attain world-
lot to him but a bit less to his family: “I am the
class stature as scientists, physicians, and
first person in my family to graduate high school.
Everyone else is in the construction or restaurant
other health sciences professionals, the
business.” Diego, who started helping out in his
teenagers are already remarkable for what
uncle’s restaurant at age 10, thought he would
they have all become: responsible individuals
with a sense of purpose and justice, the hearts
and the minds to do good work, and the skills
and renewed hope to meet their aspirations.
end up doing the same. “My family was happy
for me when I got into FACES, but they couldn’t
really appreciate enough how important that was
to me, so, in a way, I felt I was on my own.
“I grew up very independent, probably
because my mom was single. I’ve been like a
father to my younger sister since she was 3.
When people see her now, seven years later, they
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
SUMMER 2003
15
was very upset,” Diego says. “FACES is
healthcare and make an informed—and
not just a door for me. I am here
passionate—choice about future
because I love being here, because I
careers.
feel like I want to be here more than
anybody else (does). I love the place
Diego García
and I love the work. Taking
“[Dr. Magaña] was the
right person and he
came at the right time
in my life.”
say she’s (like) me. I am really proud of
her.”
Diego’s father, convicted of murder,
ADIA HARRISON
Adia’s smile is nervous at first, but
this away from me was like
soon warms to a friendly, welcoming
taking a piece of my personal-
grin. She’s a drummer in a band called
ity. It wasn’t going to help my
BFC that also features her twin sister,
grades.”
Earnestine. The band “plays the
What changed Diego’s
songs of artists [they] like, such as Korn
mind about quitting? “I just
and Papa Roach, just for fun,” explains
really wanted to be here. I
Adia, declining to indicate what, exactly,
couldn’t quit.”
BFC stands for. “It was something very
Asked if breaking with his former
friends was difficult, Diego replies,
“What was difficult was not seeing more
cheesy so we abbreviated it to an
acronym,” she says mischievously.
Like Diego, Adia Harrison
is in the California state prison system.
of them do what I did. I still hang out
learned about FACES from Dr. Magaña,
Diego reports the fact with a slight
with them sometimes. They call me ‘Dr.
who visited her high school to speak
pause but then asserts, “I’m not
García.’ They say ‘Next time I get shot
about the program. “He came with a
ashamed of that or any other part of my
I’ll go to you.’ That’s
resident, and the fact that
past. I wouldn’t be here if I hadn’t been
reality for them—stab-
they came to us made me
there.”
bings, shootings. But
understand how passion-
Diego shares a home with his
they’re happy for me.”
ate they were about it and
mother, two sisters, and an uncle. He
Recently, a local
how much they wanted it
also shares a larger “home” with the
journalist wrote that
to succeed,” Adia remem-
Children’s Hospital staff. “If there is one
FACES was a program
bers. “Their passion really
thing I wish could be different about
for “troubled youth,” a
made me want to be a
FACES, it would be having the opportu-
label that did trouble
part of the program and
nity to go through all departments,” he
FACES staff and partici-
see it succeed, too.”
says. “I love learning and being
pants not only because
exposed to new things. I’ve spent so
of its unfair stereotyp-
many hours here on top of my intern-
ing—minorities under-
ship shifts. Sometimes, I am here until
represented in healthcare are not by
were happy for their daughter. “They
10:00 or 11:00 p.m. The other night I
definition troubled—but because it was
thought it was a good step in prepara-
slept in the library because I stayed so
simply untrue. Many FACES interns are
tion for college and would help me
late working on the computer.”
high-achieving, ambitious students from
with medical school,” Adia says. The
Diego once came close to quitting
Her mom and dad, an
Adia Harrison
elementary school teacher
and a lawyer respectively,
stable environments and middle-class
program also helped answer her
FACES, when he was suspended for
families. What FACES offers participants
fundamental question: What am I going
weak academic performance during a
from all socioeconomic backgrounds is
to do with my life? Adia wants to be a
rotation through the Emergency
an eye-opening opportunity to experi-
cardiothoracic surgeon.
Department at Highland Hospital. “I
ence first-hand what it means to work in
16
CHILDREN’S HANDPRINTS
“When we had problems—at work,
at school, at home— the FACES
staff helped us solve them.”
“I want to be involved in surgery,”
Diego will be attending junior college with the hope of getting into a
nuclear medicine program—a decision
influenced by his rotation in Children’s
Diagnostic Imaging department. He
plans to pursue medical school one day,
staff helped us solve them.” Adia says.
too. Proud to be bilingual, he also
Adia says, “because I am really excited
“When we got excited about what we
wants to assist Spanish-speaking people
about being able to see and work inside
were learning or going through, they
in navigating today’s often confusing
a living person and help fix something
got excited with us. When we needed
healthcare system. Diego knows that
so they feel better. I didn’t know
time off or flexibility, they were lenient.”
being a parent, working, and attending
whether I would be an anesthesiologist
or a surgery technician, or what.” Her
rotations through Children’s Cardiac
school will be challenging. “I’m made
THE FUTURE
Diego and Adia are among the 26
for challenges,” he responds.
Adia will be attending her father’s
Catheterization Lab and Highland
out of 30 kids enrolled at FACES’ incep-
alma mater, the University of California,
Hospital’s EKG department helped her
tion in 2000 who completed the pro-
Berkeley, where she is planning to study
decide. A personal component con-
gram and graduated this spring.
earth sciences in preparation for med-
tributed to her choice of career, too:
Thirteen young people have been
ical school. She’s proud to report that
Adia’s grandfather has had a heart
accepted by University of California
most of her friends will be attending
attack and strokes, leaving him unable
schools. All graduates plan to pursue
college. The twins will be separated for
to do the things he used to.
careers in healthcare; most dream of
the first time: Earnestine will pursue her
training as physicians (see sidebar).
bachelor’s degree in music industry at
Speaking about surgery with the
excitement of a scientist-explorer, Adia
balances intellectual curiosity with a
vision of medicine that extends beyond
the University of Southern California but
What’s next for Diego and Adia?
Diego meets the question with a shy
still dreams of becoming a neuropsychologist some day.
simply “fixing a problem.” “I could see
smile. “Dr. Magaña doesn’t know this
that the people who work at Children’s
yet, but I’m going to be a father. I’m
and at Highland have a special mind-
the happiest man in the world and I can
MD, the program’s premise always
set,” Adia notes. “They are not doing
tell everyone but him,” Diego says. “He
made sense: “Give youth the opportuni-
what they do for the money. They know
has been like a father to me. Just like
ty to be what they want and can be and
their patients and they know that many
with a father, we’ve had our good times
they’ll do it,” Dr. Staggers said at the
of the patients would not be able to
and our bad times. He knows every-
beginning. “They will also deliver valu-
receive care if it weren’t for these hospi-
thing about my life but this. I’m scared
able health services to the underserved
tals. People have a purpose, and it is to
to tell him because I can see him look-
communities they come from.”
help.”
ing at me and wanting me to be a
To FACES founders and co-directors,
Dr. Magaña and Barbara Staggers,
Dr. Magaña echoed this sentiment:
physician and being disappointed that I
“Teenagers are desperate for adults to
in a medical setting, but points out that
will have a family now. I’m scared but
take interest in who they are and in
the FACES program offers more than
also curious to see his instant, uncen-
their future, and they have responded
just preparation for a career: it also pro-
sored reaction. Does he have enough
to FACES wholeheartedly.”
vides a community and an environment
trust in me?” (Dr. Magaña heard Diego’s
of support. “When we had problems—
news before HandPrints went to press.)
Adia enjoys the benefits of working
at work, at school, at home—the FACES
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
Three years after FACES for the
Future: Health Professions Internship
Partnership at Children’s Hospital &
SUMMER 2003
17
Research Center of Oakland was
launched, their vision has proven
true. Congratulations to all program graduates, who have good
reason to be proud; and to their
mentors at Children’s and at
Highland Hospital, who can take
pride in the efforts which contributed to the success of the
young men and women of FACES.
★
The 2001- 2003 Inaugural Class
Sachiko Asano-Brooks
Emmanuel Entes
Fram Kelly Saechao
Angel August
Diego A. Garcia
Yao Poo Saeteurn
Johanna Bonilla
Lugina Gonzales
Siara Dion Spriggs
Juan Cortes
Shelley Grayson
Linh Thi Dao
Adia Harrison
Judy Thi Le
Earnestine Harrison
Neal Trotter
Oakland Technical High School
University of California, Santa Cruz;
Pediatrics
Oakland Technical High School
California State University,
Northridge; OB/GYN
Life Academy
University of California, Davis;
Cardiology
Life Academy
Child Life Specialist
Rachel E. Crawford
Oakland Technical High School
Community College/ University of
California, Berkeley; Pediatrics
Christy Diaz
Life Academy
Samuel Merritt College; Nursing
MENTORS AND
MENTEES [l-r]:
Laura Padilla (FACES
graduate), Aday
Robinson, RN (FACES
supervisor), Yao Poo
Saeteurn (FACES graduate), Sachiko AsanoBrooks (FACES graduate), Shirley Reynolds,
RN (FACES supervisor),
Sonja Washington
(FACES graduate).
Berkeley Alternative High School
Diablo Valley Community College;
Sports Medicine
Life Academy
Chabot College; Nuclear Medicine
Technologist
Life Academy
California State University,
Hayward; Nursing
Oakland Technical High School
University of California, Davis;
OB/GYN
Skyline High School
University of California, Berkeley;
Cardiothoracic Surgery
Skyline High School
University of Southern California;
Neuropsychology
Krystal Jenkins
Life Academy
Family Practice
Brandon Johnson
Oakland Technical High School
Peralta Community College;
Surgery
Robert McCoy
Skyline High School
United States Marines; Paramedic
Laura Padilla
Skyline High School
Chabot College; Nursing
Lansana Russell-Hughes
Berkeley Alternative High School
Diablo Valley Community College;
Sociology
Life Academy
University of California, Davis;
Family Medicine
Life Academy
San Francisco State University;
Psychiatry
Oakland Technical High School
Diablo Valley Community College;
Social Work
Life Academy
University of California, Berkeley;
Surgery
Life Academy
Sacramento State University;
Nursing
Life Academy
University of California, Berkeley;
Computer Science, Diagnostic
Technology
Yesenia Valenzuela
Life Academy
San Francisco State University;
Healthcare
Pia L. Weatheroy
Oakland Technical
High School
California State Dominguez Hills;
OB/GYN
Sonja Washington
Skyline High School
University of California, Riverside;
Medicine
18
CHILDREN’S HANDPRINTS
Poetry
by Mamie Wilhelm
Fourteen-year-old Mamie is a published poet
and a Children’s Hospital patient.
The summer sweet as the bee’s honey,
The song as faithful as the winter’s cold,
And I, sitting in my chair,
You sing to me until I fall asleep,
You tell me to dream of horses
That gaze in the sunlight, moon and stars,
While I, sitting in my chair
With the blanket draped over me,
I read a book
While you sit knitting my socks,
The dog chases the cat and I, asleep.
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
ILLUSTRATION: NEILE C. SHEA
Summer’s Sun and Winter’s Cold
SUMMER 2003
A Cherished Break
And 7, 8 through 9 and 10 –
A doomed diverted stop:
the end.
A finding of a room anew,
A shape enclosed,
A blast that blew.
A singing sound escapes the tune
Depart the chorus killed at noon
Chill of dark and dreary books
The dreadful hand
The sturdy book
The radiant glow;
No one can take,
Alas to find,
A cherished break.
19
20
CHILDREN’S HANDPRINTS
Bridging Local Research
to Families Nationwide
Nineteen ninety-eight was a trying
year for the Yokom family: Joshua
Yokom was diagnosed with variant
combined immunodeficiency. His
prognosis was poor. His mother, Kelly
Ann, recalls he “was going downhill
really fast.”
But there was a glimmer of hope—
Kelly Ann was pregnant. During an
admission to Emmanuel Children’s
Hospital in Portland, Ore., Joshua’s
doctor, John Pasley, MD, spoke with
Kelly Ann about saving the cord blood
from her third child. Cord blood is the
blood remaining in the umbilical cord
and placenta following birth. Like bone
marrow, it is a rich source of stem cells,
the building blocks of the human
immune system. Compared to bone
marrow collection, cord blood collection
is non-invasive, painless, less expensive
and relatively simple.
In January 1999, Dr. Pasley referred
the Yokoms to the Sibling Donor Cord
Blood Program at Children’s Hospital
Oakland Research Institute (CHORI).
Kelly Ann immediately enrolled. One
month later, Joshua’s sister, Amber, was
born. Her cord blood was a perfect
genetic match to Joshua. Soon after
Amber’s birth, Joshua underwent a successful cord blood transplant. “Joshua is
doing fantastic now,” Kelly Ann says. “He
looks like a different child in many ways.
No bruises all over his body, no dark, red
circles around his eyes. His skin color is a
golden healthy color now, and he has so
much energy.”
The story of the Yokoms illustrates
how funding from the William G.
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
McGowan Charitable Fund (based in
Washington, D.C.) translates into treatments that deliver cures, sometimes when
all hope has been lost. The Fund enables
CHORI to realize the rewarding promises
of medical research by transferring benchside research conducted in our Oakland
labs to the homes of families across the
United States—and beyond.
Over the past three years, the
William G. McGowan Charitable Fund
has granted Children’s Hospital &
Research Center at Oakland $250,000.
The funding helped establish the
Hematopoietic Progenitor Cell (HPC)
Program at CHORI in 2000. The program allows CHORI staff to characterize,
process, store, and transport human
umbilical cord blood HPCs from the
newborn siblings of children suffering
from cancer, leukemia, hemoglobinopathies and other transplant-treatable
illnesses.
Financial assistance from the William
G. McGowan Charitable Fund also provided bridge support for cord blood collections while the program sought thirdparty reimbursements. It is now standard
practice for CHORI to bill insurance
companies for the release of cord blood
units to be used in a transplant. Insurance
coverage will become even more viable
once the program receives accreditation
from the Foundation for the
Accreditation of Hematopoietic Stem Cell
Therapy, which is underway.
CHORI’s not-for-profit cord blood
program is the first cord blood bank in
the world devoted solely to siblings of
children with blood diseases. Since its
S I B L I N G S The Sibling Donor Cord Blood
Program at CHORI, facilitated the collection, storage, and release of Amber
Yokom’s cord blood. The cord blood was
transplanted to her oldest brother, Joshua,
ridding him of a variant combined immunodeficiency. Joshua is shown here (left) with
Amber and Jacob.
inception, the program has enrolled more
than 1,150 families and has processed
over 1,000 units of umbilical cord blood
from siblings of children with blood
diseases. Thirty-one units have been
released for transplantation, and 17 transplants have been completed. So far, 15
children have been cured of their diseases.
“The enabling support of the
McGowan Fund has allowed us to
accomplish so much in such a short
period of time, and many young lives
have been saved as a result of their Fund’s
contribution to the program,” says Julie
Saba, MD, PhD, HPC program
director.
The William G. McGowan
Charitable Fund has been a visionary
partner in this innovative research. They
are truly helping bridge two worlds—
the world of science and medicine and
the world of families finding hope and
healing. ★
Pixar
The recent pre-opening benefit of Finding
Nemo, hosted by Pixar Animation Studios in
Emeryville, sold out and raised $35,250 for
Children’s Hospital. The event’s 235 guests
were among the first to see Pixar’s latest
feature film. Children’s Hospital Oakland
psychiatrist Andrew Giammona, MD, (right)
received an autographed poster from Nemo
director and Academy Award-nominee
Andrew Stanton. Thank you, Pixar!
Devil
Mountain
Run
Former Children’s Hospital Oakland
patient Trent Cox (second from left)
ran in the 26th annual Devil
Mountain Run in Danville in May.
Thanks to title sponsor Andronico’s
Market, and to presenting sponsor
Target, for enabling 100 percent of
run registrations (an estimated
$35,000) to benefit hospital
programs.
More than 300 Children’s Hospital
Oakland contributors were honored at
the third annual Chairman’s Circle Dinner
& Reception, held aboard the San
Francisco Belle. Hornblower Cruises and
Events served as one of the evening’s
generous sponsors. Hornblower founder
and Chief Executive Officer, Terry
McRae, and his wife, Mary, joined us for
an exquisite evening on the Bay.
SUMMER 2003
21
Honoring
Children’s Circle
of Care Donors
Five members of the Children’s Hospital
& Research Center at Oakland Children’s
Circle of Care attended the Children’s
Circle of Care National Leadership
Conference and Gala, held in May,
inVancouver, B.C. Children’s Circle of Care
is a national honor society open to the most
generous contributors to 22 children’s
hospitals in North America. Individuals and
family foundations who make gifts of
$10,000 or more to one of the participating
hospitals are invited to attend the prestigious Leadership Conference, held each
year in a different host city. Children’s
Hospital & Research Center at Oakland
staff hosted Audra and Lou
Martinaitis, Sharon Brandford,
Anthony Knutson and Donny
Lobree (see photos on page 23).
Chairman
Circle
Dinner
Infiniti Raffle
[ C O N T I N U E D O N PA G E 2 3 ]
Take a chance at winning a 2003 Infiniti G35 Coupe donated by the Hendrick
Automotive Group. The donation per ticket is $50, and only 2,500 tickets are
available. Call 510-428-3814 for raffle information.
To learn more about giving opportunities at Children’s
Hospital, please contact Children’s Hospital Foundation
at 510-428-3814 or visit www.chofoundation.org.
22
CHILDREN’S HANDPRINTS
Statement
OF
Photo courtesy of Sonja Erickson
OF
D E A R F R I E N D Aileen Simpson, 1938.
Children’s Hospital & Research
Center at Oakland lost a dear friend and
long time supporter last year. Aileen
Ruth Simpson died on the same
date she was born—December 12. But
her kindness and love for children outlives her: in her estate plan Aileen left a
generous bequest to benefit Children’s
Hospital and the kids we serve.
Aileen had made gifts to the hospital
each year for almost twenty years, so her
decision to leave a legacy for children’s
care came as no surprise; it was consistent with her commitment to and love
for kids. Aileen had no children or
grandchildren of her own, but enjoyed
the affection and company of plenty of
young people in her life. “She didn’t
look 86 and she certainly never acted
it,” notes Aileen’s niece, Ellen Muir.
“She loved the company of young people.” Aileen was particularly fond of her
neighbors’ grandchildren, who affectionately called her their “Old Grandma.”
“She was honored by her nickname
and loved the attention and hugs of the
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
Values
children,” Ellen remembers. One of
them, a 4-year-old boy, was diagnosed
with diabetes not long before her death.
“I think Aileen would like to know that
her gift to Children’s Hospital will go to
help care for children like him,” Ellen
says.
Like her idol Miss Piggy from “The
Muppets”, Aileen was a force to be
acknowledged, but always polite and
kindhearted. She deeply cared for the
well-being of her community. During
the last 18 years of her life, each week
she added her special touch to the meals
prepared at the Prime Time Senior
Center in San Ramon. Sonja
Erickson, Aileen’s grandniece,
describes Aileen as “quiet and ladylike
with a quick dry wit and a sense of
humor. She kept everyone on their toes
and entertained.”
Aileen was born and grew up in the
small farming community of LaMoure,
North Dakota, where she was active in
glee club and the Drum and Bugle
Corps. In 1944, Aileen moved to Seattle
to join some friends from LaMoure. She
met Orval Simpson shortly thereafter, and they married in 1946. The
couple bought a Kenworth logging
truck and moved to Eureka, Calif. After
living briefly in Texas, the Simpsons
returned to settle in the Bay Area, where
Aileen worked for Purex in Hayward.
Orval died in 1966. Even in this trying time, Aileen remained strong and
independent. She began working for
Kaiser Sand and Gravel in Pleasanton,
retiring in 1983. “Retirement didn’t
slow her down and she spent the following 19 years doing things she loved,”
says Ellen. She painted in oil, drove her
friends to appointments, planned
Danville Women’s Club activities, traveled, read the paper, solved the daily
crossword puzzle, and gardened. Ellen
adds. “She was sharp in mind until the
end. Always fashionably dressed, no one
ever saw her without her hair and nails
done. She was fiercely independent, outliving her car, her washing machine, and
several fashion styles.”
Aileen came from a large family.
One of eight siblings, she is survived by
her twin brothers, Wallace and
Willis Muir, and her sister Betty
Mickelsen, as well as 30 nephews
and nieces, 60 grandnephews and
grandnieces, 66 great-grandnephews and
great-grandnieces and their 75 spouses.
Her bequest expanded her family still
further, to include future generations of
kids needing care at Children’s Hospital.
“Perhaps she would agree with Mark
Twain’s quote ‘The report of my death
was an exaggeration,’” Sonja quips. But
no report could exaggerate Aileen’s independence, wit, and generosity, which
touched the lives not only of those who
knew her but also people she had never.
She lives on in the smiles of children
and families whose lives her gift helps
improve. ★
SUMMER 2003
23
L E AV I N G A B E Q U E S T
Leaving a bequest makes a permanent statement of one’s values.
Bequests are also the most realistic way for many donors to leave a
legacy for succeeding generations. Hundreds of individuals, many
of them of modest means, have left meaningful legacies for children’s care at Children’s Hospital & Research Center at Oakland.
Their gifts help Children’s Hospital continue to prevent diseases,
save lives, and deliver cures to children in our midst and worldwide.
Including Children’s Hospital in an estate plan is a practical way
to support the valuable services Children’s provides and benefit
generations of children, without affecting a benefactor’s current
finances.
We acknowledge the generosity of our bequest donors by recognizing them as members of the Legacy for Children’s Care honor
society. Their names are inscribed on our Legacy for Children’s
Care memorial and are included in our Honor Roll of Donors.
Benefactors also receive invitations to our festive annual Legacy
Celebration, special events, and lectures that we sponsor.
There are several ways to support Children’s Hospital by leaving
a bequest. Benefactors may leave Children’s Hospital & Research
Center Foundation a specific dollar amount; specific assets, such
as securities, an interest in real estate (such as a residence), or
tangible personal property (e.g., works of art, antiques, coins); or a
percentage of the remainder of their estate after the payment of any
specific bequests and all estate-related expenses.
Here is some wording that may be useful:
CASH BEQUEST: “I give to Children’s Hospital & Research
Center Foundation located at 5225 Dover Street, Oakland,
California 94609 the sum of $______ .”
BEQUEST OF PROPERTY: “I give, devise, and bequeath to
Children’s Hospital & Research Center Foundation located at 5225
Dover Street, Oakland, California 94609 my interest in (describe
the property and exact location).”
RESIDUARY BEQUEST: “I give, devise and bequeath to
Children’s Hospital & Research Center Foundation located at 5225
Dover Street, Oakland, California 94609 ______ % of the residue
of my estate.”
If you have already included Children’s Hospital & Research
Center at Oakland in your estate plan, or for more information
about bequests to the hospital, please call Emily De Falla at (510)
428-3362. We would appreciate the opportunity to thank you
properly, and welcome you to the Legacy for Children’s Care.
THIS IS NOT LEGAL ADVICE. ANY PROSPECTIVE DONOR SHOULD SEEK THE
ADVICE OF A QUALIFIED LEGAL, ESTATE AND/OR TAX PROFESSIONAL TO
DETERMINE THE CONSEQUENCES OF HIS/HER GIFT.
[ C O N T I N U E D F R O M PA G E 2 1 ]
This year’s National Leadership conference
was held in British Columbia.
Known for its spectacular acoustics, the new
Chan Center at the University of British
Columbia was the perfect location for a private
concert by Grammy Award-winning jazz vocalist
Diana Krall, as well as for the Leadership
Conference. Arriving for the pre-conference
breakfast are Anthony Knutson, Sharon
Brandford, and Audra and Lou Martinaitis.
Audra Martinaitis
delights in the Gala
dinner’s final course,
chocolate covered
strawberries served in
a chocolate box!
A harbor cruise was a
perfect way to begin
the 2003 conference.
Attending his third
Leadership Conference,
Donny Lobree enjoys
the scenery—and the
classical flute and guitar performance—on
the luncheon yacht.
For more information on becoming a
Children’s Circle of Care member, please call
Janet Crandall at 510-428-3885 ext. 5223.
CHILDREN’S HANDPRINTS
TEENS,
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
ILLUSTRATION: NEILE C. SHEA
24
SUMMER 2003
25
READY FOR CHANGE?
Since 1980, the number of
overweight teenagers has
nearly tripled. Added to the
health risks associated with
obesity are the psychological
challenges of being an overweight teenager in a culture
that embraces being thin as
the aesthetic norm. Magazine
articles often focus on which
diets work best but sometimes fail to mention that
sporadic diets do not lead to
permanent weight loss.
Lifestyle changes do. This
fitness plan was designed by
specialists at the Children’s
Hospital & Research Center
at Oakland Clinical Nutrition
department to help teens
transition into a healthier
lifestyle.
Following the steps below will help you decrease your body fat, increase your muscle mass, and
feel more healthy and fit. You may begin with adopting only two or three of the changes listed
here. Add an additional step every two weeks, until following these suggestions becomes a part of
your routine. For best results, increase exercise as you change your food choices.
u Limit drinking juice and soda.
One cup of orange juice a day is a healthy
source of vitamins C and A. Stop drinking
other juices and soda, which are high in
sugars. Water is best for thirst—carry a
water bottle with you. Occasionally, when
you crave soda or juice, you may have a
diet drink that has zero to 10 calories per
serving. Remember that a soda can or
bottle contains more than one serving.
u Drink non-fat milk.
You need calcium for strong bones. Milk
and milk products are rich in calcium.
Drink four cups of milk (or dairy products)
a day to meet calcium target. A cup of nonfat milk has 50 to 90 fewer calories than a
cup of 2 percent milk.
Hint: If you don’t like the taste of non-fat
milk, try mixing it with 2 percent milk,
gradually decreasing the amount 2 percent
milk each time.
u Train your appetite.
Eat meals and snacks at the table. If
you have been eating while watching TV,
riding in the car, or studying, these activities are now cues to eat and your appetite is
confused. Eat only at the table to retrain
your appetite.
PLAN snacks and SET TIMES for
snacks. Your body will like the routine
and start having a regular appropriate
hunger cycle. Clear out the large packages
of snack foods and make choices of real
foods such as cereal, bread, low fat cheese,
non-fat yogurt, plain crackers, fruit and
vegetables, low-fat popcorn, or hot cocoa
made with non-fat milk. Check the labels
and plan snacks that are about 100 to 300
calories each.
u Drastically reduce how often
you have fast food meals and
snacks.
Cutting the number of fast food meals will
make a big difference in fat intake. When
you do choose to eat fast food, skip or
share the fries and drink diet soda.
u Bring lunch from home.
Skipping lunch robs your body of fuel just
when you need it most, slows your metabolism, and makes you too hungry later on.
Most school or off-campus lunch choices
are loaded with fat, so the best choice is to
bring lunch from home.
Hint: Make your lunch after dinner the night
before.
u Become more active.
Limit television, computer and other
electronic time to 2 hours a day.
Increase exercise to at least one hour
a day. If you have been inactive, you may
need to add up several 10-minute exercise
periods to reach the one-hour goal. If you
are already exercising one hour a day,
increase either the intensity or the length of
exercise (add 30 minutes).★
26
ROOM
TO
CHILDREN’S HANDPRINTS
[ C O N T I N U E D F R O M PA G E 7 ]
GROW
“It is very, very rare to
see a person with a completely smooth, fused
skull,” states Dr. Sun, who chairs
Children’s Division of Neurosurgery.
Although head growth stops in adulthood, the sutures almost never fuse, or
smooth over, the way Keyvon’s did. Drs.
Sun and Toth recommended surgery.
Keyvon, his grandmother, and his
mother each absorbed the highly unusual
diagnosis in different ways. Mom
Kanani remembers bursting into tears
but can barely recall the conversation
that followed the initial news.
Grandmother Jeanne was better
prepared, but admits to having an urge
to bolt out of the room. “I remember
that Dr. Sun made a long pause between
explaining what was happening to
Keyvon and the treatment option,”
Jeanne says. “I now realize he was giving
Kanani time to digest what she was hearing, but for a split second I though he
was taking a breath to tell us that there
was nothing they could do. I wanted to
run.” Keyvon said nothing, but later
asked his grandma, “They are not going
to cut my head, are they?”
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
She answered his question directly:
“Just a little, to make some space for
your brain.”
That’s a lot for a young boy to think
about. A few days later Keyvon said, “I
think they’re going to cut this much,”
holding his thumb and index finger
about an inch apart.
To that, Jeanne responded: “Honey,
we trust the doctors completely to cut
just as much as you need.”
In the surgical suite on May 23
T H E W I N N I N G T E A M Keyvon with Dr.
2002, Keyvon was in great spirits: he
Botelho (left) and Dr. Sun.
joked and clowned, talking to the nurses
about which “tools” they were going to
use on him; he pretended to be falling
cumference of Keyvon’s head by four
asleep, then opened one eye and, in a
centimeters.
melodramatic tone, said “Pray for me.”
During the six-hour surgery, the
His energy was undefeatable—and conNeurosurgery department’s Sue
tagious. “We were almost rolling on the
Ditmeyer, RN and pediatric nurse practifloor with laughter by the time he was
tioner, called the family every hour to
wheeled away,” Jeanne remembers.
keep them informed. “At one point I
Dr. Toth made an incision that zigpicked up the phone, and there was Sue’s
zagged from one ear to the other to
voice saying ‘His skull is off and he’s
ensure Keyvon’s scar would remain invisidoing great,’” Kanani marvels, rememble even with a short haircut. Dr. Sun
bering the incredible call with a smile.
cut the skull into several pieces according
After surgery, Keyvon’s headaches disto shape and size determined by Dr.
appeared and his blood pressure
Toth, and removed the bone from the
dropped. After a brief post-op disappearmembrane that covers the brain and sepance, his mischievous spirit returned.
arates it from the skull. Dr. Toth rotated
“The surgery has changed his life,”
the sides of Keyvon’s head to eliminate
Jeanne says, “or more precisely given his
the “peak” that had started to form after
life back to him. He used to say he hated
the skull had fused. Reconstructing the
his world and that he wanted to hurt
skull, Dr. Toth used bone paste—a synhimself. Now he tells everybody how
thetic, porous material that serves as a
girls think he’s cute.” Keyvon’s family
net and allows the bone to grow
says, “We only wish we had met you all
through—to increase the space inside
earlier.” ★
Keyvon’s head. To keep the skull pieces
together, the surgeons also used plates
made of a plastic polymer that the body
slowly absorbs. At the end of the procedure, the surgeons had increased the cir-
SUMMER 2003
MEDICINE,
27
[ C O N T I N U E D F R O M PA G E 9 ]
Meaning
JUSTICE
abused after the first time
it happens, or after the second time, or even after the 20th,” he says.
“Usually kids disclose what turns
out to be chronic abuse, sometimes
years after it started. What I call
the Passover question—‘What
makes today different from all other
days?’—I apply to child abuse disclosures.
After all the times something happened,
what enabled a child to tell about it today?
Why today? If we can better understand that,
we can narrow the gap between occurrence
of abuse and disclosure so less time passes.
We may not be able to prevent a child from
being abused, but we can prevent him or her
from being a victim of repeated abuse.”
So how does one speak with a child who
is reporting abuse? “When a child tells you
about being harmed, you can’t show you’re
upset to hear about it,” Dr. Crawford says.
“You have to let the child say what she has to
say. This is her opportunity to finally
tell somebody what happened. If
she realizes you’re getting upset
she’ll stop talking. It’s hard to do
this, but it’s very important.”
Many children first “test the waters”
by making quasi-disclosures. If they perceive the adult is getting upset, they may
stop. Dr. Crawford encourages parents to
assure their children that they can always tell
them anything, and that there are no secrets.
“And then mean it when your child actually
tells you something important. Truly listening to what our children have to say to us is
an important part of keeping them safe.” ★
President and Chief Executive Officer
Tony Paap
Interim Senior Vice President and Chief
Operations Officer
David Bertauski
Surgeon-in-Chief
James Betts, MD
Senior Vice President and Medical Director
William Byrne, MD
Senior Vice President, External Relations
Mary L. Dean
Senior Vice President, Research
Bertram Lubin, MD
Vice President, Legal & Risk Management
Marva Furmidge
Vice President, Ancillary & Support Services
James Jackson
Vice President & Chief Information Officer
Don Livsey
Vice President and Chief Financial Officer
Terry Rosenthal
Vice President, Nursing
Nancy Shibata, RN
2 ANNUAL MARK
E
H
T
ND
YOUR
CALENDAR!
November 21, 2003
Vice President, Human Resources
Greg Souza
Children’s Hospital &
Research Center at Oakland
Board of Directors
Harold Davis, Chairman
Pamela Cocks, Vice Chair
Arthur D’Harlingue, MD, Vice Chair
Robert C. Goshay, PhD, Vice Chair
Barbara May, Vice Chair
Edward Ahearn, MD
Jeffrey Cheung
10 a.m. – 2 p.m.
©
CHILDREN'S SUMMIT
ADVOCACY FOR
CHILDREN‘S HEALTH
On Friday, November 21st,
Children‘s Hospital & Research
Center at Oakland will be hosting
the 2nd annual Children‘s
Summit. The topic this year is
‘Advocating for Children‘s
Health.‘ For more information,
please check the hospital web
site or call 510-428-3367.
http://www.childrenshospitaloakland.org/childrens_summit.html
Henry Gardner, MD
Donald Godbold, PhD
Seymour Harris, MD
Howard Jackson
Watson M. Laetsch, PhD
Alden McElrath
Masud Mehran
Linda Murphy
Rudolph Peterson, emeritus
Chester Weseman, MD, emeritus
Michael Duncheon, Esq., Hanson, Bridgett,
Marcus, Vlahos & Rudy Legal Counsel
Story requests, comments or suggestions
for Children’s Handprints may be
e-mailed directly to Vanya Rainova
([email protected]), or sent to 665
Fifty Third Street, Oakland, CA 94609.
Be a part of Children’s Future!
We invite you to take part in building the hospital of the future.
Dedicate a
Plaza Brick!
main
entrance
The hospital’s main
entrance pedestrian walkway will consist of 2000
of these light tan bricks,
but less than 150 remain
available to dedicate to a
loved one, celebrate an
important date or
anniversary, honor or
memorialize a friend
or family member,
recognize an individual,
business or other
hospital supporter.
Artist interpretation: Kai Yee Woo & Associates
d
Hurry...
Time is running out!
building
blocks
Children’s Hospital & Research Center at Oakland
Western Expansion Bricks and Tiles
Dedication Opportunities
Place your request online: www.chofoundation.org
For more information on this and other naming and dedication
opportunities, please contact:
Jim Armstrong, Vice President, Children’s Hospital Foundation,
Phone: 510-428-3885 ext. 5394
E-mail: [email protected]
Non-Profit Org.
U.S. Postage
PAID
Oakland, CA
Permit No. 3
747 Fifty Second Street
Oakland, CA 94609-1809